Pbc pain

[Pamela4475]

I have mild right uppercquadrant pain on and off all day.... on urso... is this an expected side effect?

[Ktltel]

Hi Pamela4475,

Not for me. No pain or discomfort until I eat something fatty. Then I have like gallbladder pain, and I don't have a gallbladder anymore. 😐

[Pamela4475 in reply to Ktltel]

Thanks

[Michiganpbc]

I have pain there but have always had it before starting the URSO it's what got me to the liver doctor for PBC diagnosis.

[Shulsey]

Hello, yes, I believe that this is a issue with PBC. Im at stage 4 & I have URQ pain often. My heptologist said it isn't the actual liver itself that hurts, but, the area surrounding the liver due to it becoming enlarged. As I've stated in past comments, I have a enlarged liver & spleen. I am dealing with the complications of cirrhosis as well. All we can do is take it one day at a time & try to stay positive. Some days that's much easier said than done though.

[Hidden in reply to Shulsey]

Shulsey I pray for you often. I pray for all of us. There has to be something out there for us. My Dr told me today that my fatigue is due to my medication and not inflammation because my blood work especially liver functions are back to normal. He said that if I exercised it could make me more tired. I'm going to Jacksonville in 2 weeks to see him. So far I feel that he's being honest with me. I didn't feel that he understood the fatigue at first but he did tell me that as my prednisone was lowered the fatigue would ease up. I'm also taking azathioprine which I want to flush down the toilet, I hate that drug. But it is what it is.

[Shulsey in reply to Hidden]

What is the prednisone used for? I do not take this medication. I don't feel that my fatigue is due to my meds because I had it before I started any of them. I don't believe that Im on anything that would cause it. My heptologist at IU said that it is just a effect of this dreaded disease & there honestly isn't a explanation as to why it happens as bad as it does. I do not exercise due to the joint/muscle pain. Praying I'll get some sort of control over that soon, I'll be seeing my family Dr & a neurologist in about a week. I do, on the other hand, feel that my bloodwork has a lot to do with how Im feeling. It seems that if something isn't too high, it's too low. Im just out of wack lol. I am scheduled to receive the Ocaliva on the 9th. Praying this little pill will help to change some things. Thanks for the prayers, we all need them every day. It's how I always start & finish my days

[Hidden in reply to Shulsey]

My dr told me that inflammation in the the liver will cause fatigue. He said that also my prednisone at 20 mgs will cause it. I take prednisone and azathioprine for autoimmune hepatitis. I also have Pbc. I was able to exercise and go to the gym for an hour and a half work out 3 or 4 days a week. I had fatigue before diagnosis as well. I blamed menapause for it. I was afraid to make early morning apt because I wasn't sure if I would be able to sleep the night before or get up early in the morning. I was told that the information causes the fatigue and hopefully in two weeks my prednisone will be lowered enough to put me back to where I was. I don't know how long I will be taking 15 mgs for but I am assuming that I will get my next medical treatment plan. did yur Dr talk to you about transplant. I asked my Dr about it and he told me that I may never need one. I am going to bring it up to him again and I'm going to ask him if I'm just supposed to suffer on a couch somewhere. This weight gain and poofyness is affecting me. I gained 15 pounds

[Shulsey in reply to Hidden]

My hep Dr said that Im looking at 5-10 yrs before Im placed on a list. He said that I basically need tI become more sick before being placed on a list. Go figure Depends on if the Ocaliva helps. If not they'll need to figure something else out, or it'll be closer to five years